‘You Are Not Alone’
Welcome I'm one of the 50 million people world wide who have been diagnosed with epilepsy. There is roughly 1 in every 100 South Africans who are afflicted with epilepsy . I say roughly simply because people still hide epilepsy from society because it is still believed to be a shameful disease and there is still a terrible stigma attached so it goes untreated and is hidden from the rest of their culture. Many third world countries still believe that epilepsy is a form of demonic possession.Epilepsy is among the least understood of chronic medical conditions, even though approximately one in three adults knows someone with epilepsy.
Like so many of us, you're busy leading your own life, doing what you have to do. So if you even have reason or time to think about it, you probably picture a convulsive seizure when you hear the word "epilepsy". Have you ever asked yourself ‘why don't I see people on the streets having seizures all the time?’ The answer is :- because there are about twenty varieties of seizures and they don't all cause what we typically think of when we hear the word "seizure". They range from the well-known convulsive seizure to momentary lapses in perception. They also range in severity. Some people are totally disabled and need helmets to protect themselves from dozens or more convulsive seizures a day. Others may be sitting next to you at work and experience nothing more than a second of disorientation that they shake off and get back to what they were doing.
I hope I can use my story to give those of you with epilepsy a chance to think "Oh yeah, I know what she means" . Just as importantly, I hope to show those of you without epilepsy how a widespread, but generally low-profile condition has a major impact on both people with the condition as well as those around them.Thank you for taking the time to read my story.
God Bless
Lynn
How it All Started Do I say I was scared, petrified, lonely , worried??? I would say YES to all of the above. The ‘body takeover’ started off slowly. Firstly I started forgetting names ,telephone numbers , bank card codes. These problems I disregarded , telling myself that it was old age that was bringing it on. (even though I was only 30 at that time). So for a further few months I went through it everyday over and over and over again. There were times I would feel like I was in a heavy fog. It was very mysterious, unsettling and difficult to describe. I would feel disconnected and foggy. My condition was causing a great deal of stress and disruption in my daily life .It eventually became so bad that I had to try hide all the different things that were going on. The feelings got stronger. Sometimes I would not be able to talk, or move my fingers, or in that case , any part of my body . It was as if I was frozen stiff. Every time I had one of those ‘strange feelings’ I had the most horrid tastes in my mouth. Sometimes I even felt as though I was flying high in the clouds!! During all these strange times my heart would beat so fast I could not even hear my own thoughts. The strange feelings and terrible tastes took over my life like a plaque. I knew there was something wrong but I did not know how to go to Michael ,my husband, and explain what was happening. I started feeling as though I was not in control with my life , I thought to myself that I was going crazy. Little did I realize these happenings were just the tip of the iceberg! One evening Michael and I were having our friends over for dinner. Almost from the moment they arrived I felt strange feelings go through my body from head to toe, it felt as though my heart was beating so fast, and I could hear every beat. I could not speak to anyone without mixing words. I also had what I thought was the start of a migraine. So I tried to keep very distant from everyone and kept very quiet. (During which time I felt so bad because I was being so rude to our friends.) It was hell on earth. I could not explain my feelings to myself so I couldn't go to Michael and ask for his help. After a while our friends left and Michael saw them to the door. I stood up ready to go and do the clearing off of the table when all of a sudden the strange feeling came over my body yet again except this time it just got worse and worse and everything started to look as though it was going round and round. After which I do not remember a thing except waking up 45min later .I had lost consciousness and apparently had fallen to the ground with every muscle clenched. I also had blood coming from my mouth, because I had bitten the sides of my tongue so badly. I do remember slowly awaking to a blurry image of my bedroom. As the image became sharper, I realized I was lying on my bed. I had no idea how I got there. “Hi honey” my husband said to me. When I looked for the voice, I saw Michael , my daughters and my Dr. were standing around the bed . “What’s going on?” I asked. The scene was totally confusing to me. Despite its familiarity, I didn’t recognize where I was at first. Everything appeared dark gray. Then Michael said to me, “You had a seizure”. From that moment on I always hated to hear those words; I always wanted to think they were a mistake. The thing is, they never were. For maybe thirty seconds back and forth I said, “No I didn’t” and Mike said, “Yes you did”. Finally, I took him at his word. I had my first Tonic-Clonic Seizure. After that first seizure I had that familiar feeling , of my body being a wrung-out washcloth and my brain surrounded by fog, so often. It’s a feeling I knew then I still know now too well to deny. Yes, I , had the one everybody imagines when they hear the word “seizure”: somebody lying unconscious, body convulsing, even making gurgling sounds. There are many other types, but those seemed to be my favorite .
For the rest of the weekend , nobody let me do anything but rest. Mike or the girls would have gotten on my case if I had attempted anything beyond go to the bathroom or to the lounge. They may not have known it, but I could not challenge them. I used so much energy in the seizure that even the simple act of sitting up wore me out even further. The act of being vertical without help felt like the equivalent of lifting weights above my head and keeping them there. It never failed to amaze me how, when a seizure happened to me, how everybody picked up all the day’s chores, responsibilities, arguments and anything else remotely stressful . Michael became both father and mother to the girls. At least, it seems like that to me in my state of exhaustion. I don’t know how I got through the rough times . After the first seizure our G P. told us that I had had my first but certainly not my last, Generalized Tonic-Clonic seizure. It was the first time someone had put a name to my condition. Left Temporal Lobe Epilepsy! I was actually relieved to finally find out it was not in my imagination. And it explained what had been happening in my life. I was dosed heavily with medication and told “that’s how it’s going to be for the rest of your life”. Even on heavy medication , I was still having between 7 – 10 Absence seizures (smaller seizures) each day ,during which I would lose control of my speech , movement and memory .In addition I would have about two to three Generalized Tonic-Clonic Seizures a year, the plastic smells, breaking my teeth from grinding, mood swings , I forgot things so often, slept all the time, cried for no reason, got frustrated when my words came out wrong , I had trouble concentrating .The goal was to have medication eliminate my seizures, however; I had not been that lucky.. It was the most difficult time of my life. Sometimes it was hard to even get out of bed and face the day. Every time I had a seizure, no matter how big or small, it affected me emotionally and physically .I went from being a very independent person to a person who was not even allowed to close the bathroom door while bathing. Nobody can truly know the pain of epilepsy until they have been there. No one can really understand the feelings of shame, of dependency, of self–loathe, and of denial. After that 1st seizure I was sent from neurologists to neurologists trying every new drug and diet on the market but to no avail. I grew pretty apprehensive about all doctors in general, but neurologists in particular. If you just go to doctors for an annual checkup or an occasional illness, thinking about them doesn’t take up a lot of your brain capacity. If you have a chronic or long-term condition though, you come to appreciate their ability to alter your life. That ability may have helped or hurt you or at different times both, but it’s to be appreciated. Without neurologists, I might not be here today. Many seizures I had over the years have hurt me, but one of my neurologists may have prevented the one that happened in the wrong place at the wrong time, the one that killed me. I can’t prove that; I’m happy to be here to speculate.
On the other hand, I’ve had at least one hundred or so Tonic-Clonic seizures while under neurologists care. This has been despite all the testing, countless medicine changes, hospitalizations and untold visits to doctors emergency rooms. This all came with the territory of epilepsy and I’m not complaining. For the most part, those neurologists followed professional standards when treating me.
So what do you think? How should I regard neurologists? Every 6 months or so, I saw the doctor who treated my epilepsy. When I enter his office, I’m given a questionnaire to fill out regarding the number of seizures I’ve had since my last visit, the type of seizures, when they occurred, the average duration between seizures and other information I can’t accurately provide. Usually a neurology resident or fellow gives me a basic neurological exam that includes little tests like following his finger with my eyes, walking toe-to-heel in a straight line and others that seem insignificant, but provides him or her with information. Afterwards, my neurologist steps into the room to discuss my recent history and what changes, if any, should be made in my treatment. He then writes up prescriptions, tells me to see him in 6 months and we say goodbye. I set up the exact appointment time with the front desk. For me, epilepsy was like riding a roller coaster - different medications to try and just when you think you've got things under control, there's another loop in the track and your back at the beginning of the ride. A little while after I had had my first seizure the company, where I had worked for 15 years became very “embarrassed” with me. They would not let me answer the phone or speak to any clients! They made me feel like an outcast. Only 1 year later, 30th June 1998, they made me sign a document which said that I had to leave because of health reasons! The moment they asked me to do that I knew that even though I loved draughting with all my heart I could not stay for one more moment in that environment. Two years later on the 1st March 2000, I was asked by a Town Planner to join a firm. The first day I started working for him I told him that I suffered with epilepsy. He then told me politely that he did not hire epilepsy he hired me! Since that day he has looked after me every step of the way. He has never let me work a full day. He felt a full day would tire me. When I was not feeling too well or I had had a Generalized Tonic-Clonic seizure the evening before he would not allow me to work. I was promptly sent home to recover.
In November 2004 I suffered my worst Generalized Tonic-Clonic seizure. I was unconscious for more than 50minutes. (It took my doctor, his nurse and Michael to hold me down to be able to give me an injection to relax me.) What that seizure did leave was the realization that the meds were no longer effective and the possibility of me being seriously injured or even killed during a seizure was a real one. I felt at that moment like a fatal accident waiting to happen. I also felt that my own faith and inner strengths were being tested. My husband and children were also wondering when and if the situation would begin to improve for their sakes as well as mine. I was then sent to visit another neurologist In Port Elizabeth . As simple as it sounds, my stomach churned when I walked into his office. I thought about it and wondered why I was nervous. I’d been through this a million times and knew the whole routine by heart. Maybe it was due to some bad experiences in the past. But it was the past after all, and I tried to relax. I didn’t succeed. When the doctor came out to the waiting room he glanced at me looked at his chart, then said, “Lynn, how are you? Please follow me.” I did, and we went directly to his office. I was a little surprised he didn’t lead me to the exam room so he could have somebody else do the usual tests, but figured he have me examined after we talked. To my surprise, he didn’t. This break in the routine made me more apprehensive. He suggested that I go and see Doctor James Butler at Constantiaberg Medi-Clinic Nero Science ward in Cape Town. He suggested that I spend 4 or 5 days in the hospital for an extended EEG, in the hope that Dr. James Butler might see a focal point for the seizures. His thought was that if he could find it, surgery could correct it . By now, I did not like the thought of hospitals. They separate me from my family, caused them to worry and when everything’s said and done, nothing’s changed. At that moment I was very scared but finally after years of confusion, drug testing, unhappiness and frustration. I finally had been given hope. My employer was only too happy to send me. He paid for the trip by plane there and back. The Testing starts On 14th February 2005 I entered the doors of Constantiaberg Medi-Clinic in Cape Town ready to go through all the tests needed. I was taken off my medication and attached to an EEG 24 hour video monitoring machine. Extensive testing is involved because, while some types of epilepsy can benefit from surgery, it becomes more complicated when the seizures are not limited to one area or one side of the brain. Fortunately, my seizures were in a limited area. They needed to confirm that my seizures came from an area in my left temporal lobe, as that is what I had been diagnosed since the first seizure. I was required to spend the majority of time on the bed as you are connected to the EEG at all time, Michael never left me alone and brought lots of magazines ,laughs and love. On the first night, the EEG showed that I had had ten minor seizures and my doctors were very happy!! , but the strangest part was that the seizures showed that they came from the Right Temporal Lobe.During the second day there a gentleman, who had come from England to have a brain operation, was brought back to the ward, I got the shock of my life. He had a scar from his left ear to the right and from his forehead to the back of his head. Taking one look at his scars I decided there and then that no matter what, I would not ( even if that would be the only choice ) go ahead with a similar operation. For the rest of the week I completed all the tests required. The team of specialists, headed by Dr. Butler was very supportive and guided Michael and I through all the testing. On the 18th of February 2005 Dr. James Butler told me that my condition was treatable. I could have what he called a Right Temporal Lobectomy he said that the tests had shown that I had Right Temporal Epilepsy and not Left like all the other Doctors in the country had told me. They would also have to do what they called Awake Cortical Mapping. This would be that they would ask me to name common objects, (e.g. Ball, pen) that they had shown me before I went into theatre, while I had the operation done. At the same time I would be receiving electrical stimulation .This would be very important because I am a right handed person but my memory was on the right side. (It should have been on the left) So in order for them not to damage any part of my memory (any more than what the seizures had already damaged) they would have to find where the memory was situated.I was told that the object of an operation would be to improve my psychosocial status. I had what Dr. Butler called Medically Intractable Epilepsy. (No matter how much medicine I took it would NEVER control the Epileptic seizures I was having.) In having the operation he said that I would no longer have seizures of any kind. Whether or not to proceed is an individual choice. So Michael and I talked about the pros and cons of the surgery but the final decision was left up to me. At that moment, I was against it. Weighing up the possible risks and benefits is not easy. Who would want to have brain surgery? Certainly not me!!! To me, surgery was a difficult concept to grasp and it really felt like a last resort – did my condition warrant something as dramatic as removing a part of my brain? So I made excuses: I was too busy at work at that time and they needed me, my children were too busy at school with projects and sport and they needed me, Michael was too busy at work to take time off. So a week after I had arrived I returned home to King William’s Town, saying that I would go back at the end of the year for the operation. 2 hours after I got home I had another General Tonic-Clonic seizure and I was unconscious for 15 min. My family took charge: they wanted their old mom and wife back.. So with the help of my current employer, my family and our best friends, Michael and I went back to Cape Town. Without Michael being next to me at that moment I would not have been so brave. Wada Testing After I had arrived back at the hospital they started a process of tests so that they could determine the exact position of the damaged area that causes the seizures. I knew that the procedure sounded drastic, but if the surgery was successful, I would no longer have seizures. Due to the damage that the seizures had inflicted already upon my brain functions, I knew that the risk of removing an already affected portion of my brain would be worth it. On the 28th of February 2005 I had what they called the Wada test. The goal was to test how the left side of my brain would function if the right temporal lobe was removed – this is a major concern of having this surgery. The seizures were in an area that impacts my speech and my short-term memory. As I laid on the bed preparing for the test, a wonderful technician helped calm my nerves. They had to enter a needle to get into my main blood stream. It is located in the femoral artery where your leg meets your hip . At this point, I was so scared, and my heart was pounding. What if, what if, what if… With several doctors and medical personnel present, the test began and the Left side of my brain was ‘anesthetized’ , allowing them to examine how the right side of my brain would function on its own. They flashed pictures, letters and cards to see if I could correctly identify various objects. Once the medicine started to take affect I had trouble talking and had difficulty responding to the objects they were showing me. I can now remember what some of them were, but at the time, I struggled to make correct identifications and comparisons. Then the process was switched, they then ‘anesthetized’ right side of my brain, I then found it was a lot easier to respond to identification of the objects. My doctors kept encouraging me, however and I made all the identifications that I could, despite feeling very challenged. I lost track of how long the test was taking, but was reassured that I was doing great and that the test would be over soon. After we finished, I felt overwhelmed and could not remember if my doctors were pleased with the results. I was told that the doctor went to Michael and told him I did great and that I had passed the test. They were able to conclude that the left side of my brain was able to completely respond to memory, speed and identification on its own. Although I thought that I had been failing in certain areas, my feelings were just a normal reaction to the stress I felt. I was now a candidate to have surgery!!! Taking the Final Step towards Normal Life Michael said that it was up to me to make the final decision and I still had time to stop the process but he recommened that I have it done. Dr.Butler and Dr. Melvill, who I trusted, also recommended that I move forward and take the step . So at that moment I knew that there was no going backwards only forward. I did not want to spend a tremendous amount of time thinking about what could go wrong so I tried to focus, instead, on what would happen if the surgery was successful. I might never have seizures again or, at least, could reduce the number of seizures that I have, or maybe there would just be no change at all. I understood the situation, but it was still very difficult to deal with the stress of waiting. The next 24 hours in my life was the longest time ever. I tried to relax, but spent a tremendous amount of time crying, thinking and talking about what I was about to do. Negative thoughts kept coming to mind, but I always tried to go back to my basic reason for having the surgery: this was the only way to reduce the frequency of my seizures, and in the process, reduce the risk of potential damage to my brain functions. It was a significant emotional experience for me. I traveled to the very depths of my heart and soul but one thing I do know is that I wanted to take the risk to increase the quality of life for my husband my family and myself. On Tuesday the 1st of March 2005 between 3.30pm – 8.30pm, I put my faith in God and I put my life in the hands of the doctors and nurses .I under went the surgery, I don’t remember seeing any of the articles that I had to recognize, but the neurosurgeon told me that I had not made any mistakes with recognizing the articles but ever time I answered him I would include my husband’s name (for e.g. . “That is the BALL that Michael plays with”, “That is the PEN that Michael writes with”.) Thank you to a special dedicated team of surgeons, doctors and nurses who preformed the miracle. Especially Dr. James Butler and Dr. Roger Melvill. After the surgery, I remember waking up, seeing Mike and my heart was swollen with love. I could not believe that I had made it and I only wanted to be with him. He held me as best as he could but I was connected to multiple medical systems and could not move. Mike told me that Dr. Melvill said that the surgery went very well and that I was doing fine. At that moment I thought about how our lives would change if I never had another seizure. During the next 2 days, I slept, slept and slept. Mike was comforted by Dr.Melvill and Dr. Butler’s positive comments. I do not remember all their visits, they told Michael that it would be up to me to make the choice to get on with my life. On Thursday night Dr. Butler told me that It was time to get out of bed so that I will be strong enough to go home to see my girls. After hearing this it felt like a light, which had been turned off, was switched on. On Friday morning I got out of bed, went for a shower and started to behave like a person with a mission behind me. I wanted to go home so badly so I pushed myself. 4 days after I had the operation I walked out of the hospital doors. At that moment I knew that I have a job to do, I have to make people who have epilepsy realize that they have choices in life. Road to Recovery My recovery was difficult .When I returned home, I could not work yet and I suffered from very bad headaches and nausea. My face and head were swollen and bruised and I felt a great deal of pain around the staple area of my head, which goes all around the back of my ear and down the front like a question mark. I had many headaches and could not listen to loud music or watch TV . It took about three weeks to feel like a human again. I went back to work 4 weeks after the operation but I could only work part-time when I initially returned. My brain would only function for several hours a day and I needed a lot of sleep. My current employer allowed me to take my time and he allowed me to stop when I could not carry on a particular day. But time has now passed, however, and my physical and emotional stamina grew. I began working like I had in the past, even without a portion of my brain. While I had always thought that I was going to have another seizure, so far I never have .How lucky could I have been? My speech and memory has improved tremendously and I have become a happier and a more confident person. My recovery has progressed well. This is hard to believe that it is 3 and half years since the operation. It may seem strange to keep track of the monthly anniversaries of my surgery, but I feel like it is similar to surviving cancer – you keep track of every healthy day! Every day, week and month goes by with a silent prayer and we continue to celebrate my successful surgery So far, so good. Mike and I frequently discuss what we have been through in our relationship. We joke that in our twenty one years of being together, we have been through more than what most couples go through in a lifetime. Every day I think about what I have been through, and feel grateful to my doctors, my family and my good fortune. I've seen love , support and more in Michael. He lived with everything that came with me having epilepsy. Michael had to do so many things that should have been done by two. The same goes for my three children, who even when they were so small that together, they were still younger than me, stopped playing to help me when I had a seizure. When it would have been totally reasonable for them to run off in fright, they showed the bravery of children twice their ages to take care of me. I include my extended family - mother, father, brother and sisters, mother-in-law and sisters and brother-in-laws who at different stages of our lives, helped us physically, emotionally and financially when epilepsy knocked me/us off our feet. I want to embrace my friends who showed me what being a friend really means. Even the occasional stranger, who helped me and blended back into the sea of humanity before I had a chance to say thanks.
So yes, I have a lot of wild stories to tell and information to share. But first person accounts should also be third person - me telling you about the people who shown me the good in life I might not have otherwise seen. I hope this story has helped you to see and appreciate it in your own lives as well. The exact manifestation of what has occurred is beyond my comprehension. It is as though a domino effect has occurred. Believing I have broken free from the shackles of my epilepsy has perhaps freed me of fears and anxieties that must have been accompanying it for all those years. In its place I feel I have woken to a perfect existence where some of life’s struggles, pressures and need for acceptance no longer seem to exist. But most of all the 1st of March 2005 will always be a very important date in my life. That is why , on the 1st of March 2006, I started a Epilepsy Support Group called You Are Not Alone. It started with just 2 people , myself and a very good friend , Gail and now there are over 230 people are on our contact list, we mainly contact each other by email, sms , telephone and postage. This just shows that there is a hunger out there for information and support in South Africa. Epilepsy sits in the background of other major ailments like AIDS and Cancer but it is just as important . On the 1st of March 2007 I started designing newsletters it is now sent to over 230 email addresses , which includes members, schools, hospitals and businesses. This is just another way to spread the word about epilepsy. On the 1st of March 2008 I started my own website www.youarenotalonesa.4t.com . And as of the 1st of March 2009 I will be supplying clinics , in the rural areas , with posters , that I have drawn, to explain what to do or not to do when they see someone having a seizure. This is a project that has been in the pipeline for a year and half. People with epilepsy in South Africa and the world , no matter what age, creed or gender should be allowed access to the best medical care and respect and not made to feel unworthy just because they suffer from Epilepsy. I am hoping that other people who have Epilepsy will be able to read about what happened to me and believe that there is hope! I am living proof. Surgery is not "magic" and it’s not suitable for everyone with epilepsy. But for me, it was. My husband and children now have their wife and mother back again. Thank you and God Bless Lynn
